Catherine and Julio Pita were already seasoned parents when they learned they were expecting their sixth child. But when an ultrasound at Catherine’s 16-week prenatal visit showed their baby had a hole in his heart, they were surprised and unprepared.
“I thought the tech must be wrong,” says Catherine. When they saw the doctor, they got more troubling news — not only did he have a hole in his heart, but also transposition of the great arteries (TGA) and ventricular septal defect (VSD). “We were referred to a cardiologist in Houston right away,” says Catherine.
The couple, who were living in Austin at the time, traveled to Houston.
An evolving diagnosis
“They told us it was a very ‘fixable’ problem,” says Catherine. But as her pregnancy progressed, a new diagnosis emerged: double-outlet-right-ventricle (DORV), a condition where the pulmonary artery and the aorta both connect to the right ventricle. This makes the heart work harder to get enough oxygen-rich blood out to the body and can affect the blood flow to the lungs as well.
“They said that although it was more complicated, they could still perform a complete biventricular repair, but we’d have to deliver the baby in Houston,” says Catherine.
The Pitas embraced the idea of a biventricular repair for their son because it meant both ventricles (pumping chambers) in his heart would work and he would have normal blood flow. They relocated their entire family to Houston, and Colin was born on October 14, 2013. A month later, he went in for the surgery.
“When they had him on the operating table, they realized they couldn’t perform the biventricular repair after all, and had to do a temporary fix instead,” says Catherine. “Since they hadn’t done a catheterization or an MRI, they didn’t know the VSD was in a very difficult position and the vessels were too complex to do a good repair.”
The Pitas were heartbroken.
“All our hopes and thoughts for Colin’s future health were suddenly dashed. It was devastating.”
The doctors in Houston presented the family with a new plan. When Colin was about a year old, they would perform a second surgery. At that time, they could revisit the biventricular repair or perform a bi-directional Glenn, the second surgery in a traditional single ventricle repair, where both ventricles function as a single pump to the body and the blood flow to the lungs bypasses the heart completely. In the long-run, this type of circulation is known to have an increased risk of multiple complications.
When it came time for the second surgery, the surgeons decided to go with the bidirectional Glenn. They told the Pitas that a biventricular repair was simply not possible for Colin because it was too dangerous.
Seeking a second opinion
That’s when the couple started thinking about getting a second opinion. Early on, Julio’s father, a physician, had recommended they reach out to Dr. Pedro del Nido, chief of Cardiac Surgery at Boston Children’s Hospital, but Julio and Catherine had been too overwhelmed at the time to think about traveling to Boston.
“Colin’s primary cardiologist in Austin also talked with us about exploring other options,” says Catherine. “He thought a biventricular repair might be possible given Colin’s anatomy.”
These discussions gave the Pitas the confidence to pursue a second opinion. “We really wanted a biventricular repair for our son, but we wanted to make sure it was the best thing for him, and that it wouldn’t cause more harm than good,” says Catherine. “In the end, we thought we owed it to Colin to explore every option.”
One morning a few days later, Catherine awoke before the rest of her family and found a link to del Nido’s email on the Boston Children’s website. She sent off a quick message explaining Colin’s situation.
“I thought I may never hear anything or just hear from an assistant,” she says. “Forty-five minutes later, I got an email back from Dr. del Nido, asking for all of Colin’s records. He said that from what I was describing, Colin would be a great candidate for a biventricular repair.”
Catherine was overjoyed. “It was so easy. If it had been more complicated, I might never have sought the second opinion. It was such a beautiful thing.”
Traveling to Boston
Del Nido asked them to come to Boston for a heart catheterization and MRI to see if the surgery was feasible. Catherine made plans right away. She would travel alone with Colin to Boston, while Julio remained at home with their other five children.
After the MRI and cath, they met with del Nido and cardiologist Dr. Puja Banka.
“Drs. del Nido and Banka really put me at ease,” says Catherine. “They said surgery was definitely possible, and that Colin’s heart wasn’t even the most complex they had successfully done.”
They scheduled surgery for the following Monday, and del Nido was able to perform the repair as he expected.
“When he got out of surgery, I asked Dr. del Nido what kind of outlook he saw for Colin. He said, ‘I see a full life expectancy; that’s why we do these surgeries.’ That was so amazing to hear.”
Colin was out of the hospital in about eight days, but he and Catherine stayed in Boston for another week, to make sure he was clear to fly home to Texas.
“At the end of that week in Boston, I was walking Colin down the street in his stroller and he wanted to get out and walk,” says Catherine. “He walked for two blocks and for the first time he wasn’t breathing hard. That was such a beautiful moment.”
An ‘extraordinary experience’
Now 4 1/2, Colin is thriving. He has no restrictions on his activities, and a recent check-up with Banka confirmed his heart looks great. The family is now living to Colorado, where Colin has enjoyed learning to ride a bike and ski.
Looking back, Catherine says it’s a miracle they found their way to Boston.
“I don’t ever want this experience to feel like anything less than extraordinary, because it was extraordinary,” says Catherine. “Getting his repair in Boston was the greatest gift ever. We were told it was impossible, and here he is two years later, running around and doing amazing.”